When I felt a tingling from my little toe to midway up my left calf, I had no idea that this small annoyance would change my life. But, I have to admit it alarmed me. I knew enough about my body to know that it was an unusual sensation. A week later, under tremendous stress at work, the tingling had moved to my right leg and moved above my knees.
I was just about to turn thirty and my working career was finally on track. All at once unusual feelings in my body and a very difficult work situation combined to ambush me. It was the spring of 1981. I suddenly remembered reading the account of one of the Iran Hostages who had been released by his captors and was subsequently diagnosed with Multiple Sclerosis. I had another inkling that the disease seemed to be dogging me.
As a teenager, I met a woman who was bedridden and virtually paralyzed from the effects of MS. I was a very impressionable and empathetic girl and told my mother that I would rather die than have that happen to me. I never spoke to the woman about her illness, but as I look back on it I now remember how even from her bed she was very politically involved and engaged in her life. It took me some years to learn from the courage she showed me in two very brief visits.
Many years later, working and living on my own, I made friends with a woman much older than myself whose husband lived in a rest home because of the disabling effects of the disease on his body. I marveled at her positive attitude and good humor in the face of such hardship in her life. It was not long after I left that job that I had the first symptoms of MS: the tingling in my legs.
I was young, ambitious and on my way professionally. But in the ensuing nine years, I continued to have an undeclared war with MS. Because the disease had so frightened me I unconsciously learned a great deal about it before it was ever a factor in my life. As it began to make inroads on my nervous system I felt like I was checking off symptoms on a long list. For a while, I lost all feeling in both my feet, experiences extreme light sensitivity and would periodically trip or walk into a wall. I was exhausted all the time.
The one manifestation of MS that I did not yet fully understand was the sapping effect of heat on my body. I lived in an unconditioned apartment where the average temperature from July through September was 100 degrees. No wonder there were times when getting out of bed in the morning was akin to running a marathon.
When I had vision problems in one eye, I consulted an ophthalmologist, who unaware that I was running as fast as I could away from the reality of MS in my life, told me the problem was either stress induced or a symptom of MS. In tears, I called the therapist I was seeing and told him what had happened, but of course failed to reveal the most salient fact: I was in terror of the diagnosis I had already given myself.
My feeling was, “If I just ignore it, it will go away.” In the meanwhile I was working forty hours a week, going to college at night and trying to keep my emotional temperature above sheer panic and despair. Over and over I visited my doctor complaining of leg weakness, my first case of incontinence, weakness in my hands and traveling numbness in my body.
MS is not an easy condition to deal with. On the other hand, it’s manageable.
I never told anyone that for a period of time as I woke up in the morning, the world literally did somersaults for a minute or so until my brain and my eyes agreed on where I was and what I was seeing.
Through all of this, I was lucky enough to live with my closest friend, who although she did not understand what I was going through, kept me on a steady keel as much as possible. Finally when I was thirty-nine, and at the end of my rope, I asked my doctor to refer me to a neurologist.
By the day of my appointment, a month later, I was an emotional basketcase and a physical wreck. I barely made the drive home from work because my left leg and foot decided in the middle of Los Angeles traffic that it would no longer work the clutch pedal. My oldest sister accompanied me to see my neurologist, with whom I now credit much of my calm and optimism.
He shouldered me through his exam and accompanied me out to the front when we were finished to set up an appointment with a radiologist for an MRI. When I received his diagnosis four days later he could not have been more calm and reassuring, telling me he had good news and bad news for me.
He never told me the bad news. The good news, he said, was that I didn’t have a brain tumor, but that the lesions on my brain and my history indicated Multiple Sclerosis. For an instant, I felt like all feeling and all my life had been sucked away from me.
I sat looking at the images of my brain thinking, this can’t be real. It’s just my imagination. I continued to listen wordlessly as he spoke to me about the disease, telling me about the unpredictability of MS. He had a patient who had just sent a picture of herself skiing when six months before she’d been in a wheelchair. Hearing that word, my feelings broke through the floodgates. I broke down and sobbed, “I don’t want to be crippled.”
From everyone that I have met who share this illness, I gather the courage to look ahead and the fortitude to stop looking back.
Almost seven years later, I still cry out inside, I don’t want to be crippled. But as time passes and I find it harder and harder to walk from five feet or five yards, I have learned to compensate for what I’ve lost by appreciating all that I have gained.
MS has certainly impacted my health and with it my physical activities. I deal with some of the most common symptoms of the disease, bad balance, bladder problems, feet that are either freezing cold or feel like they are covered in hot coals, fatigue, dizziness…yes, I could go on, but anyone reading this will get my point: MS is not an easy condition to deal with. On the other hand, it’s manageable.
A month after I received my diagnosis a close friend of mine was diagnosed with AIDS. I was thirty-nine. Stewart was twenty-six. Within a year and a half, he was gone, as was another friend of mine, Michael, who succumbed to stomach cancer within a week of Stewart. Because of them, I feel blessed to be alive and to have a future to look forward to. Difficult or challenging, I still have a lifetime to explore the possibilities in my life.
As a young girl, my dream was to be a writer, but because I supported myself for twenty years, my work took precedence over my aspirations. It was only when I went on Federal Disability in 1994 that I said to myself that I no longer had any excuse not to write. As of this writing, I am just completing my third manuscript and hoping that someday I will be a published author. Even if I’m not, I am fully engaged in my life, uncrippled by a disabling disease that turned me down another path.
From everyone that I have met who share this illness, I gather the courage to look ahead and the fortitude to stop looking back. I will never run again or enjoy a long hot shower after a day at work. Independence is a thing of the past. Then again, I’ll never be eighteen again.
If nothing else, Multiple Sclerosis has taught me to accept and adjust to changes in my life. Every day is a new beginning as it was many years ago when I first felt a tingle in my left foot.
Through these long years I know that I have lost a lot, but what I have gained is immeasurable. I discovered the strength within myself to ask for help and to go forward, no matter how slow and tentative my journey has become.
My aunt wrote this essay about her Multiple Sclerosis diagnosis well before the disease ambushed her hands, preventing her from being able to continue typing on a keyboard and write.
In the years after she shared her experience, MS became greedier, taking from her the ability to sit in a wheelchair, to swallow, and ultimately leaving her housebound during the final years of her life.
Her life with MS was difficult, every action hard-fought more often than not, but she pushed forward every day, with grace, humor and quiet bravery.
Last Friday, her body couldn’t fight this battle anymore. Surrounded by her family, Patti York Pourade passed away at home, finally free of the shackles of this insidious disease.
Now that her battle is over, I know she’d want people living with Multiple Sclerosis to know a couple of things: Look for joy in family, friends and other things that you love. Don’t be afraid to ask for help. Always look forward.
Most of all, always remember that you are more than your disease.